what about any new treatments for dysautonomias?

[lindalilley]

I was diagnosed with dysautonomia back in 1995 and with symptoms since 1988 (born in 1953) and had to retire 3yrs ago due to the disabling symptoms of this autonomic dysfunction syndrome that has been identified/labeled as Postural orthostatic hypotensive syndrome/hyperadrenergic syndrome/ with symptoms of severe fatigue, insomnia, syncopal episodes and severe dizziness.  Health status had declined due to severe heat intolerance and inability to tolerate exercise without significant consequences.  Any suggestions?  I have been a patient and in several research protocols at Vanderbilt Medical Center since 1995 and am now on mitodrine and florinef.

[Freefran5]

I have been on Mestinon 60mg tid for about 2 months now and am so excited to be feeling so much better. Before, all I could do was focus on getting home from work and hitting the couch until the next morning. I am now functing more like a normal person. I am still tired and suffer many symptoms but I can get some chores done in the evening and work in my garden a bit. The Midodrine just makes me feel horrible. I live in Bakersfield, Ca and the heat here is intense so we have to be careful. We, meaning my 25 year old daughter and me. We both have Dysautonomia (my daughter has POTS). My daughter is also taking the Mestinon bid along with her Midodrine and has noticed a marked improvement as well.

[sharasugar]

I too have the same diagnosis and symtoms and what feels like a million more.  My Dysautonomia is both central and peripheral and affects almost every part of my life. The newest of the symptoms are severe chills. I can be sweating  -- I do have heat intolerance and severe excessive sweating of the face and head -- and I start shaking with chills -- goosebumps and all. This gets worse with exercise. Have  you or anyone you know experienced this?
I am considering the Vanderbilt Research program myself and would love to hear of the experience.
So far I have tried Depakote but couldn't stand the side effects. I am just starting Elavil for the excessive sweats and only time will tell if it's  effective.